Strength

As a caregiver to my daughters I strive to be the best advocate I possibly can, try to remain positive about the future and guide them wherever possible whilst also keeping as much of the control over their lives in their hands and not mine.  This can be difficult as when they are really sick they need to pass over the control to me but I am mindful to pass it back when they are well enough to take it on board again.

To be a giver is something as a mother you do naturally for most part.

The giver of love - yes that's unconditional.

The giver of good vibes- now that can be a challenge on days when you just want to turn your face to the wall and cry with frustration and anger that this is happening to your children. Trying to be Zen when you feel despair and to throw out good vibes is something I am not always capable of doing but working at and hoping to be able to turn on and give out with practice in the future.

Giving strength can be draining and exhausting both emotionally and physically but I feel every carer does naturally try to do that at all times.

This past week has had many a bump in the road (more like gigantic potholes to be honest) and I have been struggling to know what course of action would be for the best. 

My two youngest daughters  continue to suffer many a bad day due to their ME, it causes horrific fatigue - post exertional malaise (PEM), described by http://www.cfids.org/  as being;

"Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . ."

This week they both started their home tuition, which has been a big step forward for them towards the road back into education.  Tasha is still very much in the acute phase which means she is only able to manage very short bite-size amounts of tuition before she is exhausted - literally 5 minutes is all she is managing initially.  For Tara, who has now improving very slowly, her initial tuition session is between 30-60 minutes. 

But with ME this seemingly small step to those on the outside is a mammoth one for them and inevitably causes a degree of PEM.   This will continue until their bodies adjust to the new activity and settles down.  This means any additional activity has to be minimised during this period of adjustment - it's a case of taking baby steps not big leaps.  

Education is a challenge too due to brain fog issues - which is a common symptom for ME sufferers.   It means that they can only start off doing very short stints of school work with their tutor and build up their tolerance very gradually, over a period of weeks or months, it is explained by Dr Myhil as;

• Poor short term memory
• Difficulty learning new things
• Poor mental stamina and concentration - there may be difficulty reading a book or following a film story or following a line of argument.
• Difficulty finding the right word.
• Thinking one word, but saying another.

The knock-on effect of this also means that they can't see as much of their friends, mess about on the computer, or use their energies in anything that will further drain their resources.  Instead they will need to take rest periods between activities and try to pace as best as they can.  In the past our efforts have failed and the education has had to be discontinued due to the severe PEM it caused and so this time round we are being cautious.

I stress this because ME is a serious and very disabling illness that is not taken seriously as yet by a vast swathe of the population who have been fed misinformation about it being a psychological attentions seeking illness of the lazy!!  Also, because it is an "invisible illness" where sufferers don't always outwardly look sick so they aren't always believed.   

As you can appreciate, when you live with this illness, seeing this reaction from others makes my blood boil, as why on earth would anyone, let alone a child, pretend to be ill and restrict their life so enormously, lose friends, miss out on education and so on?  It is a physiological illness and yes of course there are psychological implications which develop due to devastating impact it has on what was previously a healthy, active, normal life. 

We have utilised the advice and support of the TYMES (The Young ME Sufferers) Trust and would say for anyone with children diagnosed with ME that I can highly recommend you log onto the website.  It's full of advice, publications and support for your child and they also have a volunteer run helpline you can call (leave an answer-phone message if no-one answers, they do call back).  It is headed by Jane Colby (an ex-headteacher) who is a huge campaigner for children with ME.  http://www.tymestrust.org/

Another great source of information is Invest in ME  (http://www.investinme.org/), who are active in funding biomedical research into ME and also provide a wealth of information - they have produced a great leaflet that can be downloaded and printed off to pass on to raise awareness in the general public to help fight this ignorance about the illness. 

http://www.investinme.org/Documents/Education/IIMER%20Info%20leaflet.pdf

In it it defines that ..

ME is a severely debilitating neurological illness.  

It has distinct: onset; symptoms; causes; responses; and, long and short term prognoses. 

ME is an acquired illness with multi system involvement which is characterised by post encephalitic damage to the brain, brain stem and the Central Nervous System (CNS). 

Reaction to physical and mental activity and sensory input is unique to ME. 

Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours. 

Symptoms can range from mild to severe to life-threatening and can include: 

● Cardiac and Cardiovascular Problems 

● Cognitive Dysfunction 

● Gastro-intestinal Problems 

● Headaches 

● Hormonal Imbalance 

● Immunological Problems 

● Muscle Weakness and Intense Pain 

● Neurological Problems 

● Sleep Problem

So folks I suppose amongst all my ramblings what I am trying to share with you is that our life is tricky, there are many, many battles we have to face on a regular basis.  We take two steps forward and one step back - BUT it's got to be better than one step forward and two steps back - no?  

I am on a mission to share our experiences, raise awareness wherever possible and hope that if enough of us do, eventually we will gain the recognition and support so desperately needed. Never underestimate the power of many, eventually we will be heard.

So I take on board that life is hard for us as a family, some days so bleak it's hard to remember any joy or laughter ever existed within these walls - but then I shake myself down and remind myself that no matter how hard life is, how little light you can see from your end of the tunnel - there will be better days ahead, I believe vehemently that there will and that there will be treatments and with a uniform recognised biomedical approach for sufferers in the future.  

I hold onto the good and great days - for they will come again...

~ Blessings ~

x~X~x